Mental illness is more often than not associated with incompetence, fragility, frugality, vulnerability, undesirability: And yet we all have minds, which minds could go ill and if poorly managed the illness runs a life time.
Mental health awareness is a call to the imperativeness of taking care of your mind just like you will do your body. It is equally in my opinion a call to demand an equal treatment of those with a mental illness just like those with a physical illness. I know this is an ideal!
And so here we go: Hello World, during this month of May which is Mental Health Awareness month, I also intend to feature authors who have written on mental health, especially about their personal experiences. An author to me is anyone who has written and published their writings be it on or offline, via a blog, magazine, book or etc.
My first author to be interviewed in this series is a dear friend and one old enough to be my mum actually. I clicked with Pamela Spiro Wagner around January 2014 via my blog. We have been friends since then and she is the only person from the US I met through the blog and have had the honour of meeting in real life.
I have done a modest review of her epic memoir on my blog, as co-authored with her twin sister, and have also read some of her poetry. Pammy did my portrait even though hospitalised, and it took 3 visits spanned over 6 – 9 hours. It is among my most precious possessions. Without much ado, I’ll interview her for your reading pleasure and let her tell us more about herself and her life journey, especially that to become this published author she is today today mindful of her Schizophrenia diagnosis.
1) The Profile
Let’s Start with a brief introduction of yourself – your background – and a tiny bit about your Childhood:
I am an identical twin, the older one, and the slightly bigger one at birth. Pigeon-holed as stoical even in childhood, I was given the message, often voiced aloud, that I did not need anything and that I did not have feelings. My twin was given the opposite message, by the way. Nevertheless, my childhood was relatively uneventful until 6th grade when 2 things happened. First President Kennedy was assassinated, which changed my life in terrible ways: this was when I started hearing voices telling me that I was evil and that I had killed the president. Then a couple of months later I had a very traumatic accident while skiing. I broke my leg and lay on the freezing ski slopes for hours waiting for rescue. When they finally brought me down my leg was first set without anaesthesia, which I endured, as I knew I had to, without making a sound. Then only hours later it was set a second time. This time, the surgeon clamped a mask of anaesthetizing ether gas on my face but failed to initiate the air intake valve, in effect suffocating me. I tried to resist, because he was killing me, and was restrained. The last thing I heard before I passed out was him saying, “Oh my god, I forgot to turn on the gas…” Then all went black. I told my parents nothing about either of these events. Why? Because of course I was stoical and did not need anything. And because I also knew in my heart that no one would believe me or take my struggles seriously. Nevertheless, these things – believing I had no right to feel, hearing voices and the trauma of my accident, deeply affected me all my life.
About your Memoir, how did you come up with the title?
Our publishers chose the name, DIVIDED MINDS, which was a title they had used before with success. We had nothing to do with it. Alas, our original title, which I had chosen and always prefered was SOLO FOR TWO.
2) The Soul Journey
I read that schizophrenia affects 1 out of 100 Americans; what’s your take on that?
Well according to most statistics this holds true, pretty much world-wide, the 1 in 100 persons being affected by schizophrenia. But you know, I doubt the validity of this number. And I doubt it because it is really a matter of opinion and nothing more. What is schizophrenia? Can anyone tell me? It is not anywhere in the brain that one can point to and despite the lies we have been told , it is NOT a chemical imbalance or some overproduction of dopamine. No one HAS schizophrenia, , not the way you have malaria or measles. It is a matter of what you say and do that in the opinion of another person makes them judge you as psychotic and out of touch with reality. I do not in fact believe that a person with schizophrenia in the USA would be accounted as schizophreinic or “crazy” everywhere, not in say, India or Africa … and so forth… Times change, definitions of madness change. That does not happen with malaria or measles, does it? Because judgments change and opinions change so notions of so-called mental illness change too, but usually facts do not.
How did you get your diagnosis and how have you fared since that diagnosis?
I was first informed of my schizophrenia diagnosis when I was about 28 or thirty, but that was the first time I was told any diagnosis at all. I had been hospitalized several times before then and as early as 18 but literally no one had ever spoken to me about diagnosis. This doctor came right out and told me, “You have schizophrenia”then he said, “You dont have to end up on the back wards if you take your medication, properly, and for the rest of your life.” Then he started me on Mellaril (Thioridazine), which I took at higher and higher doses and along with doses of Thorazine (Chlorpromazine) as high as 1500mg for years. These did not keep me well, not by any means, despite the medications I was hit with more and more frequent stays in the hospital. Knowing what I know now, that antipsychotic medications do not work and only increase the tendency to relapse, I would not say that the decision to put me on Mellaril was the best thing he could have done for me. In fact, I would say that it is possible that the diagnosis itself was the worst thing that could have happened to me, or the best, depending on how you look at things. Life is life and depending on where you are in your journey, things can seem like a mistake or a miracle. To me, now, despite my take on diagnoses being wrong and just name calling, I nevertheless believe that what happened to me at that point in time was possibly the best thing that could have happened. I do know it was inevitable and that it happened for a reason. And that things that subsequently occurred because of it have all led me to where I am today…And where I am today I would not change for the world.
Can you tell if there was a difference in the way you were treated and the way you perceive stigma before and after you got a diagnosis?
I was never once put into four-point restraints until I was diagnosed and then they tied me to a bed with my arms stretched above my head and shackled to the bed posts and my ankles shackled to the lower bed posts and kept like that for three full days. Later I learned from an aide that the doctor told him “schizophrenics” do not feel restraints the way normal people do…they do not suffer the way WE do.” I did not know what to say to that. This aide had heard me beg and beg him to let me free and knew how I had suffered, so how could he make such a statement? It confused me terribly. Later on, they put me in restraints to punish me and knew perfectly well that I suffered for it, and I know they enjoyed hurting me. I did not know a thing about schizophrenia before I was diagnosed and little really after it except that people would talk about “crazy people” and make fun of them, but NO one was ever so crazy to me that I did not understand them. I am a poet, and I know that people sometimes have to be understood the way you understand a poem, not taking every word literally but just taking their words in whole, accepting them with your whole heart and mind and body, and knowing that you “grok” them. No body has ever been so psychotic to me that I did not “get” what they meant fundamentally. They just speak in poetry not prose.
PS: If you have read this far… wow thank you… P2 tommorrow, as Trevor Noah says on the epic Daily Show: So Much News So Little Time